Monday, March 09, 2009

"Congratulations! I have something important to tell you . . ."

I met Brian Skotko on Friday, and I was very impressed. In fact, I was relieved that he said "irregardless" once; otherwise I might have developed a major crush on him. (Hey, we all have our little pet peeves. That's one of mine, regardless of the fact that Merriam-Webster's Online Dictionary says that it is, technically, a "word.") I'm being very light-hearted here, of course. Dr. Skotko was extremely nice and very well-spoken.

I am excited by the work Skotko is doing, and I really enjoyed his presence and the talk he gave on Friday to a group of physicians, nurses, genetics counselors, and social workers at two different local hospitals. Skotko's research is compelling, his presentation dynamic, and his personality warm, inviting, and surprisingly humble.

Skotko was talking about the ways that physicians - or others - share a diagnosis of Down syndrome with pregnant women/mothers either prenatally or postnatally, and the effects of the way the diagnosis is given. If you have an interest in this kind of thing and have a chance to hear Skotko speak, do it!

As part of his presentation, a representative from the Down Syndrome Association of Greater St. Louis shared information about the many fabulous resources the organization has available for hospitals, practitioners, and parents. Then they had a parent speak to share her experience learning the news of her baby's diagnosis. I was honored, delighted, and thrilled to be able to share my story at one of Brian's talks, and I'd do it again in a heartbeat. Over and over. It was one of the most rewarding and important things I've done lately.

The whole presentation went very well - the doctors, nurses, genetic counselors, and social workers in the audience were very engaged, active listeners - and afterward they asked a few questions! Then Brian Skotko made me feel even better than I already did. "In two weeks they won't remember a thing I said," he said, "but your words will stick with them." I doubt it's true - his presentation was memorable and striking - but I hope that they do remember my experiences too. Skotko quoted an English study where mothers were asked, before they left the hospital after having given birth, to share the words their doctors used to share the diagnosis of Down syndrome with them. 20 years later, the research team followed up with those same mothers, and with 90% accuracy, they remembered the words exactly! 20 years later! This is an important task these providers have, one that sets the tone for the way women feel about their babies and impacts them for years to come.

If you'd like to read the rough text of my little speech, read on! (If not, I'll see you tomorrow for . . . politics!) Below is my written draft and misses a few of the little flourishes and (hopefully!) laugh lines I add in while I'm talking.

I am Sarahlynn. I’m a 34 year old mom and writer married to a 31 year old director of business intelligence for a healthcare organization. We have two daughters, ages 2 and 5. Our 5-year-old has Trisomy 21, and we learned her diagnosis when I was about 20 weeks pregnant.

Although I didn't feel so at the time, I was lucky in so many ways. I was lucky because I live in a wonderful city with tremendous medical resources, and I was lucky because my obstetrician was tied in with many of those resources.

I was standing at my desk at work, gathering some files to take to a big meeting, when my phone rang. I probably should have let it go to voice mail, but I answered instead. It was a medical assistant from my OB/GYN’s office. She told me that I’d screened positive for Down syndrome and would need to go to the high risk pregnancy center at Wash U for further testing and to talk to a genetic counselor.

That appointment happened relatively quickly, but the intervening days were miserable and confusing. Of course I did as much internet research was possible during that period, learning, as I did so, that “screening positive” did not guarantee that my baby would have Trisomy 21.

Indeed, as the genetics counselor later told me, given the results of the blood test my risk was only 1 in 221. Still a relatively small risk! She took medical histories from my husband and me, then told us not to worry.

“Everything is going to be fine,” she assured us. “You’re young and healthy. This is just a false alarm.”

Then we walked across the hall for the Targeted Ultrasound, where the technician was great. Then the perinatal specialist came in. He had a quiet, reassuring voice, and he did a good job of telling us about our daughter’s heart defect and other “soft markers” for Down’s. He was also very accessible to me and my frantic phone calls over the next several days.

After meeting with him, I went back to see my own OB. Unfortunately, the two doctors hadn’t had a chance to touch base, so I had to relay all the information to her, though I was a hormonal sobbing mess.

She reminded me that she’d encouraged me to have the quad screen even earlier – I think she was worried that I might be litigious – then said what I considered to be a very professional and appropriate thing. “This is the last day that you could legally terminate in the state of Missouri,” she said. “But if you do decide to go that route, please come to me. I’ll make sure that you are referred somewhere safe in another state. I don’t want you to try to take care of this on your own.”

Later, I did mention to her that the worst part of my experience was hearing on the phone at work, “You’ve screened positive for Down syndrome” from a medical assistant. The doctor was adamant that they always share the specific results, but then, it wasn’t she who actually made the call. And it’s possible that the medical assistant did say something about a “screening test” being different than a “diagnostic test,” though I didn’t hear much after “You’ve screened positive,” so I can’t be sure. And I know that I didn’t hear the specific results until we met with the genetics counselor.

Throughout my pregnancy, the nurses and medical assistants encouraged me to bring my baby when I came back for my 6-week check-up after delivery so that they could ohh and awww over her. “We love seeing the babies,” they said. The second worst part of my experience was that the doctor didn’t look at my beautiful baby once. The nurses and medical assistants didn’t ask to hold her during my exam. Nobody showed any interest in her at all, and I felt like they thought she was damaged. This wasn’t the road I’d expected or hoped to travel, but this child was mine, and I loved her so much. This bit of rejection was painful.

The third worst thing about my experience was the false hope held out to my husband and me by the genetics counselor. I appreciated hearing the science, the odds, the unlikelihood. But I wish she hadn’t been so adamant that everything was fine; it just made finding out that much harder and more shocking.

Still, in retrospect, I think I was lucky. I got to find out about my baby’s diagnosis in time to prepare myself and assemble a great medical team. I got to read some books about babies with Down syndrome and look at pictures. I got to decide, to CHOOSE to have her. I got to change the hospital at which I intended to deliver, to be closer to a children’s hospital. I got the best medical care and advice I could have gotten.

But it could also have been a bit more sensitive.

7 comments:

RobMonroe said...

Thanks for sharing your speech - I'm sure it was even more appreciated by the people who were in the room going through the same, or similar, experiences that you have had.

...regardless of how many times Mr Skotko used the wrong word. :o)

Sarahlynn said...

Rob, the really cool thing was that I don't think there were people there who'd shared my experiences. The audience comprised people who GIVE the news, not those who've received it, and the goal was to teach them to give difficult news in a helpful (rather than a hurtful) way. So cool!

And Dr. Skotko was VERY well spoken; I'm just poking fun. He is also extremely nice. :)

Brian said...

Sarahlynn,

I very much enjoyed the opportunity to speak with you to the physicians in St. Louis. Your story will leave a lasting impression, "regardless" of whatever I managed to convey.

Cheers,
Brian

Sarahlynn said...

Brian, I'm such a jerk. I'm sorry! I really was trying to be funny . . . but I often just come off as rude. I sincerely apologize, and hope you know both how much I appreciate what you do and am impressed by you!

Cate said...

Excellent post, excellent speech.

Love the first/second/third worst parts, an excellent way to tell it.

Thanks.

Suzanne said...

So I am back and catching up and OH HOW ELLIE has grown.. and I have enjoyed the variety of your blogs. Now I gotta get with the program. Thanks for letting me know you missed my updates a while back..
Suzanne www.specialneedsmom.com

Sarahlynn said...

Thanks, Cate! Putting my thoughts on paper really forced me to think about the experience in a way I hadn't before. I've just accepted it for what it was and how it felt. It was a new way of thinking - to consider how it could have been better.

Suzanne, welcome back! Thank you for stopping by! I've been wondering about you and your family. :)